I have had TN for 8 years - I first came after I got Breast Cancer......
It used to only come for 6 months of the year - Autumn & Winter, when it was colder.... and was worse when I was in snow in NZ on a holiday.... I took so much Tegretol 1200mg then that I ended up with Lupus......
Then it changed and started coming any time it felt like it.
Late 2011 I discovered (from a lady who had TN and now is okay) an old 1960's remedy Vitamin B12 - so I started taking 1000mg B12 a day and after 3 months one side of my face was pain free, it took another 3 months and the other side was free of pain. I had a blood test for B12 at my doctors - levels can be 50 to 811 and mine was at 612 so okay - its water soluble like most B vitamins. I put it under my tongue and let it dissolve. You can even get Raspberry flavoured B12 :0)
I went into remission for 9 months with no pain, it was amazing. Then 6 weeks ago it came back, slowly, but I had been slack and backed off the B12 not taking it every day.... so now back on B12 again and hope it soon sorts it out....
The difference this time; is that the pain is not quite as bad, plus I can eat and talk, which I couldn't in the past, plus I can manage the pain better with lower doses of medication (Tegretol). I wake in the morning with pain and after a milk drink or something to eat; put a B12 under my tongue, sit on the verandah with my cats & the pain actually goes away - it is really working for me...
B12 builds up nerve sheaths... and I believe that is what it has been doing, maybe I need to continue daily like Glucosamine for arthritis, repairs on a daily basis....
It has also helped with the needles & pins in my hands/arms - just diagnosed with Carpal Tunnel.
I hope this information can help other people....it is worth a try....
I would be interested if anyone else has tried B12 ?
hugs from Gail
Thanks for sharing Gail, do you know if there are any complications taking B12 with tegretol ? I’m glad to hear it has worked so well for you! I’m going to mention it to my doctor. Hope it works well again for you this time!!
Btw, you can always key in B12 into the search box far upper right and read past posts involving B12 here on the forum, I’m sure others use it as well.
I have also been taking B12 in tablet form and did consider injections. I know there is no proof of it helping but I like you felt better for taking it as I know it can do you no harm.
No problem taking B12 with Tegretol... I did for months and am now as well....
Good to know! I may add that to my treatment regiment. Thanks for sharing your success!
My Aunt Patsy is in her mid-eighties. This spunky lady raised 7 tremendous kids and has the sharpest memory. She use to be quite the space cadet,too.
Years ago she worked for a dr. Every few weeks a woman would come in to see the dr screaming in agony.
Dr. gave her shots of B12 and they worked.
A few hrs ago i was reading on wikipedia to be careful with the b12 that it can be carcenegic. Too much or two little...
But, hey, me and my broken arm are definitely going to give it a try! Carpal tunnel may be next! I sympathize.
Tegretol was very helpful for about a year then the efficacy was reduced to zilch. I had a hard time with it. Major league drug IMHO.
A friend's son developed epilepsy and one morning never woke up. Sweet Eric was about 30. IDIOT dr.doubled his Tegretol dose without checking his blood. So very sad.
Let me know how you are doing and how you figure the dosage.
i got the pain, then the BC. Took me years to say the "c" word- the scariest word in the English and Spanish languages.
Just be cautious as you seem to be. :o)
Hi Gail, also take B12 have been taking this for a couple of years Stopped it for awhile did see a bit of difference. It is helpful in restoring healthy nerves. I take 3000mcg a day. It helps me for other issues I have that affect various neuralgias. Well I feel comfortable taking a vitamin than some of the other meds I am on. Also take sublingual cherry flavor makes it a bit easier. Even if B12 helps a tiny amount it is definetly worth trying. Good Luck Gail !
Thanks tatoo20 I am interstate with new grandson & family, B12 still helping as pain now not on right side, only left side & dulled enough that I can talk most times & eat when tegretol (200 mg 3 times a day) kickers in. I do not want to increase meds, as then they interfere with lifestyle too much - ie scramble the brain too much & effect eyesight. I use milk on my stomach before taking Tegretol so it does not upset my stomach. Hence I am still putting up with a fair bit of pain, but I keep busy which helps.
April I will get another blood test to see what my B12 level is. Last year it was 612 and can safely go to 800. I am waiting on an appointment with a new Neurosurgeon for a complete review of it all & a new MRI.
Knew I missed something this morning. Thank you for B12 information. I have bilateral too & terribly sensitive ears. One other thing I meant to mention, the only drawback to peppermint is that it is cooling. Eucalyptus is warming but it makes your face look a bit flushed if you have sensitive skin. Took my B12 thank you so much! Goodnight.